holland, italy, and wherever we are now.

so most parents who have children with special needs have read the poem, 'welcome to holland.'  i have written about it here, and here on my blog before.  the grand idea is that as a parent of a child with special needs, you think you are going to italy with all your friends, and they when you land you find out you are really in holland.
so with shilo we knew we sort of chose holland.  but we also would say that the part of holland we thought we had landed in is not where we are.  there was just much more that came up than anyone could have guessed ahead of time.  it is the ply of parenting.  it holds no absolutes.

however, the part of, wherever we are now, that has been the biggest 'adjustment' is (re)learning how to talk to our daughter.  you see, having a child who is deaf, and choosing to use sign, is like waking up one morning and someone telling you that your child is going to speak another language, oh, and by the way, it's your job to teach them that language.  it's a wee bit overwhelming to try to learn, speak, and teach a new language all at the same time.
we have awesome resources available to us, that we are utilizing.  the state's school for the deaf has an outreach program, and one week we have a parent advisor (who talks about language, and lots of little idiosyncrasies that one might not think of because they can hear) and the next week a deaf role model (who is deaf, and only signs, and so we fumble through trying to understand each other and learn new stuff).
but becoming fluent in a new language takes a lot of time.  and it's really hard to hold a baby, a book, and sign all at the same time.  so you have to re-learn how to read a story to your child.  and trying to sign while someone is talking at the same time, it's nearly impossible for my brain to function in both modes at once.
so right now i speak broken asl.  i sign the words i know, and just leave out the ones i don't.  and i feel self conscious, and guilty that i can't give my daughter all of the language she needs.
but there is also a really fun element to it.  an element of our family have a language that we can use, that not very many other people will pick up on.  a language that makes our little wiggle and smile every time we use it with her.  a language that our big pulls out when she is feeling shy or overwhelmed.  and it feels sort of special and intimate, like it knits our family together, as a unit, in a way lots of other families aren't.

are you interested in learning some basic signs?  we love www.aslpro.com , signing time, and then youtube you can find just about anything as well.  maybe you can learn some small part of what we are at mannchester estate, and join us, in wherever we seem to be now.

teaching big.

sometime over the last few months we came to a schooling decision for our big.  because of her age, and the way her birthday falls, she is slotted to start kindergarten in the fall of 2014.  however, she is able to do all things required to enter kindergarten right now.  she is completely incapable of sitting for long periods of time and doing work. public schools here no longer offer 1/2 day kindergarten.

we were at a crux.  i have always sort of wanted to home school.  it isn't because i think public schools, or school teachers are horrible.  actually quite the opposite.  it was simply because i like teaching my daughter.  i love watching her figure out new words, and knowing i got to be the one that helped her learn to read.
i also really love that if she's interested in something, we can go with it, where as in a school setting, she learns whatever they are learning at that time.  and because of no child left behind, and testing laws in our state, there are schools that aren't teaching subjects that won't be on the state testing because the schools funding depends solely upon test scores.  there are also children not getting any recess time because of preparing for test.   i believe children need time to run their energy out, dance, and they also need to learn things like history and science.
so we came to the conclusion that we would home school next year, and re-evaluate things as we go.  i already do preschool stuff with her very loosely, so i'm trying to have a little more focused time each day to prepare her for next year.  we have decided on some of our curriculum i think, but i'm also very excited about extra stuff that i'll get to teach as she shows interest.
when big was about one i found some flash cards in a dollar bin.  they were the presidents in order with dates they were in office and so on.  i figured some day they would come in handy.  she recently found them and wanted to do them.  so i have made up a song as we go, and we are learning the presidents.  when i say we, i mean both of us.  because i do not know all of them.  we are about a week in, and she can do the first seven.  i'm pretty sure she could learn anything if i put it in song form.

here's hoping my creative made up songs keep flowing over the next year!

just like her.

we have some parenting philosophies that i believe are common among most parents.  one of them we refer to as being graceful parents.  others might call it 'choosing your battles.'  if abigail wants her hair in five ponytails, most the time, that's what i do.  it might not look awesome.  but i don't care.  if she wants two barrettes, a sparkly headband, and a purple scrunchy in those ponytails, well more power to her.
there are lots of other places this comes into play, but her clothes are definitely my favorite.  for the most part, the only request i have is seasonally appropriate.  so if she wants to wear a summer dress i just ask that she put on long sleeves and something to cover her legs so she isn't cold.  what tends to happen is that she finds her three favorite things in her closet, a shirt, either pants, tights, or leggins, and a dress.  she usually wears either her snow boots or pink sparkly shoes with whatever her attire is for the day.  here, let me share a few shots with you.

red and white turtleneck, turquoise leggins, pink socks with hearts, pink dress with flowers, sparkly pink shoes, read headband, and a sea green purse with animal print.  

white shirt with red and pink paisley flower design, lime green tigths with pink and blue stripes and hearts,  red and white dress with a plaid design, and this was accompanied by her pink and purple snow boots.

red pants, light green shirt with white flowers, purple dress, and this as accompanied by her pink sparkly shoes.

the thing about these outfits is that not matter how ridiculous it is as she's pulling things out of the closet, she looks beautiful in it.  i know, i'm slightly biased, but she still gets compliments when we are out (yes, we leave the house looking like this).  i love her ability to be who she is.  if she feels like carrying a purse that day filled with three things from her doctors kit, a polly pocket, and papers that she's stamped 'happy easter' on, then that's definitely what we will be doing.  i hope someday  to be just like her.  i don't know that there is hope for me to get those same brown eyes, and eyelashes that go on forever, but i want that little heart; the one that says, 'call me princess abigail today' and knows that everyone will.  i want to be bold like her, come downstairs after getting dressed and say, 'how do i look?  papa is going to think i look so beautiful, and he's going to tell me i look beautiful in my dress.'  i want her confidence and poise.  i want her ability to feel comfortable in her own skin, knowing that she is beautiful, and she is smart, and she is worthwhile.
so if you see me out with abigail sometimes, and both of our outfits look questionable, please remember to call us princess and tell us how beautiful we look.  i am only dressed that way because i want to be just like her.

things that are needed.

i have waited quite some time to share this first story.  i could not, for so many reasons, put these words out there for the world to read. i have fear that someone will read them and use them as fuel in a fire i'm not interested in being part of. please do not use my words for that.  and do not respond with hatred or malice for the one who originally said them.  the way we change others is love.  but they need to be shared so you can understand something bigger.  so read the story, but please don't comment on that one small part of what i'm trying to share here.

jason, shilo, and i sat in an emergency room.  shilo was sick.  there were lots of things going on around us.  a doctor walked in.  the attending doctor, not the residents or fellows who had been caring for her.  she asked a few questions about health and history.  i answered.  and then this, 'did you know, before she was born, that she was going to have down syndrome?'  i could feel my heart beating faster and louder at the question.  i knew that lots of people had been asked this question.  and i knew that if followed with a yes, there was often an inquiry of why one didn't abort.  i spoke confidently.  'she is adopted.  we intentionally set out to adopt a child with down syndrome.'  deep breaths.  deep breaths.  'oh!  how noble of you to adopt a child that is such a, such a....i'm trying to think of the right word.  such a burden.'  i didn't respond. i couldn't respond.  she walked out a few seconds later.  jason tried to convince me that she was attempting a compliment.  i tried hard not to find her and tell her that i didn't want her to take care of my daughter if she saw her as a burden.

you need my daughter with down syndrome.  you need people with special needs, disabilities, cognitive delays, and physical limitations. they are not a burden.
i could tell you about how people with special needs often end up with siblings in a service field.  i could share this story with you to show how they develop compassion in others.  i could tell you how our daughter with down syndrome, in ways we never could have predicted, has knit our family together closer with each breath she takes.  but this is not why we need these people.
we need people who are different than us, who have limitations, and who are often seen as a burden to society, to realize what it means to be human.  first corinthians 1:27b says, 'God chose the weak things of the world to shame the strong.'
when we take out those who's abilities don't hit the standards everyone else does, we become the people of babel.  let's build a tower so that nothing bad can ever happen again.  we can keep out the things of the world we don't want to happen.  no tragedies here.  no drunk man crying on my sidewalk because he witnessed his dad get hit by a car.  no little girl lying in her bed right now who could have a tumor looming and we don't even know it.  we have conquered the world and have rid it of all things deemed 'uncomfortable' to look at, hear about, or think about.  yes, our world is perfect and we can move on to greater things.  we, as a people, are perfect.
but, ridding our world of the weak things will prove only to do what those who are weak already do: it will shine a great light on our own weaknesses.  it will remind us that walking, talking, breathing, and living may not always be easy, and it may not always be possible.  it will take away the miracles that are found in everything.
 it is a miracle when two people come together at just the right time, and somehow,that 25% chance of becoming pregnant, takes place.  nine months later, a child is born.  46 chromosomes all intact and accounted for. no more, no less.  all genetic material is present, all organs work correctly.  they roll over, sit up, crawl, and then walk.  they learn new things every day, and grow up and start the cycle over again.  truly miraculous.
it's also a miracle that jason and i can come together at just the right time, and our bodies cannot procreate like they were designed to. it is a miracle that my oldest daughter has more than one disorder in her body, and still is able to live each day doing things typical four year olds do.  it is a miracle that my little had five heart defects, and each one played off of another in a way that if that other hadn't been present she would have died within minutes of birth.

i know our world works hard on finding cures, fixing things, and medicating away uncomfortable.  some of that is right.  some of it is needed.  but we also need those uncomfortable things.  we need to be reminded that some things are unfixable, and some incurable.  somethings that might seem like a burden, will bring about great insight into a world that is only common and ordinary without them.  and sometimes, those things we see as burdens are born with the most beautiful, almond shaped eyes, and the kinkiest curliest hair, that one has ever seen.  and sometimes you fall hard and fast in love with them, even if it means your life might have days of hard and ugly.  and sometimes, when you look back at things that seemed hard and ugly at the time, you might even be thankful for things, like the miracle of not getting pregnant.

pictures and winners.

big.

little.

mama and papa.

sisters.

and our trademark epic family picture, always titled: what life is really like.

we had family pictures done with all of my siblings and neices and nephews for my parents for christmas.  these are a few of our favorites.  and to make things work out better, i had commentors on here, and some on facebook.  so i picked one from my blog, and one from my facebook.  the winners of the oh so awesome headband are:

blog commentor:  random.org says #4 which happens to be rachael a, whom i met when we were at riley last year.

facebook commentor: random.org says #8 which happens to be nancy b.

thanks for letting me know who is reading, and how you ended up here.  in case you feel unsure about leaving comments, you should know that i like comments.  they make my heart dance.

a new vocabulary word.

shilo has been on a blenderized diet for around two months now.  it has completely transformed our lives, for the better.  no more puking or gagging.  no more constipation.  no more hours of being hooked to a feeding pump.  she recently came off of zantac completely (reflux medicine) and can sleep flat in her bed (instead of with her mattress at an angle).  when i think backwards to all of this, my eyes tend to fill up with tears.  i've had a few people suggest that maybe it was just the type of formula she was one.  but we had tried multiple formulas, and nothing ever changed.
our most exciting development, though, is that she is really interested in eating. by mouth.  she watches our forks from plate to mouth.  she wants to be part of meals.  and as always we continue to work with her on her oral feeding skills.
but it's become somewhat disheartening.  everyone keeps saying, 'oh she will get it.'  or, 'just give her time.'  the thing is she's not getting it.  she doesn't gag.  at all.  she loves food in her mouth.  she even moves it around with her tongue.  but she doesn't have a swallow reflex anymore.  it's completely baffling because she doesn't slobber at all.  so either she doesn't produce much saliva, or she swallows her saliva.
we've been working with an o.t. on eating stuff.  and tomorrow a speech pathologist starts.  but after many a conversations someone finally said, 'you know it's possible she has nerve damage from being intubated so long.'
i politely agreed, hung up, and jumped on google scholar (google scholar has medical articles, and reputable sources, where as if you just google something, you may or may not be getting truth).  i came across numerous articles on extended intubation and something called dysphagia.  dysphagia boils down to being a swallowing disorder that can be anything from tongue issues to the esophogus not doing what it should.  i read article after article.
then i came across one that made my heart sort of stop.  it was on pediatric patients who had open heart surgery and the risk factors for dysphagia.  i read through the numbers and statistics and looked through the list of things that put a child at higher risk for having issues:  under three-check, intubated prior to surgery-check, transesophogeal echocardiogram-check (an echo is a picture of the heart by ultrasound.  after ohs they do this by putting a probe in the throat to make certain everything is repaired before closing the chest), intubation of more than seven days-check.  sounds like shilo was a pretty high risk case for having dysphagia.
i continued to read.  and came across the lines about how a child who has this will do best if they have intense speech therapy as soon as possible.  nope.  we didn't get that.  matter of fact, we are almost nine months out from surgery and we are just now getting ready to start speech.
so we are taking deep breaths here.  with each new vocabulary word, label, diagnoses, that comes along with our children, i am always surprised at how disheartened i feel.  shouldn't i have this down by now.  both of our children have multiple diagnoses.  but this one stings a little more than others.  it isn't like when we found out she was deaf and just shifted to signing and finding other ways to communicate.
it's more of the wondering if i will be washing g-tube extensions for the rest of my life.  it has me considering that the blender i make jokes about being part of our family, really will become a standard part of each mealtime.  and it breaks my heart a little that my little who is very interested in eating food, may not  be able to be sustained by it.
i have made goals for shilo and eating.  and even with this new word looming (we don't have an official diagnoses yet) i still will continue to do all that i can to try to help her learn to eat. i just wanted one thing, for shilo, to work for her instead of against her.  but, somehow, i know that with each new obstacle before her, we will continue to see new and amazing things with her.  we will learn over and over to celebrate the small victories that other people miss, and we will learn that God's grace is sufficient to get us through.

understanding hearing loss.

imagine your child is riding her bike.  she somehow manages to fall at just the right angle, and it becomes obvious immediately that she has broken her leg.  you take her to the doctor, have x-rays done, and wait to hear how bad it is, how long you will need a cast, and if any surgery will be needed.  the doctor walks in and says, 'it's broken.  i'm just going to go ahead an amputate it.'  you're thinking, wait, is that necessary?  would a cast not work?  pins or screws?  having it set?  is this really our only option?
it's pretty unusual for a child who breaks their leg to need it amputated, although not completely out of the realm of possiblity.  and if a doctor suggested this as the first option you would likely want a second opinion.  i'm going to compare this to my youngest daughter being deaf.  whenever someone inquires about her hearing aid, or finds out she's deaf, i immediately get a 'oh, are you going to do cochlear implants?'  of 'you should get those implant things so she can hear.  have you ever seen those youtube videos where a child hears for the first time?  it's just amazing!'
i don't expect the general population to have information on hearing loss and how it's treated.  i only knew basics before shilo came along.  so i'm going to try to explain why cochlear implants do not work for everyone, and why shilo has a baha.
first of all there are tons of little components that make up your inner ear, and aid in hearing.  you have an ear drum, some tiny bones, air and space, and a cochlea.  the first few things take the noise in and send it to the cochlea, which is hooked to a nerve.  that nerve sends the signal to your brain to tell you what you are hearing.  if any of these things isn't developed correctly, or does not work, your hearing is affected.  even an ear infection causing fluid to build up behind the ear drum can cause temporary hearing loss.
there are three different types of hearing loss:
conductive hearing loss:  Conductive hearing loss occurs when sound is not conducted efficiently through the outer earcanal to the eardrum and the tiny bones (ossicles) of the middle ear. Conductive hearing loss usually involves a reduction in sound level or the ability to hear faint sounds. This type of hearing loss can often be corrected medically or surgically. 
sensioneural hearing loss:  Sensorineural hearing loss (SNHL) occurs when there is damage to the inner ear (cochlea), or to the nerve pathways from the inner ear to the brain. Most of the time, SNHL cannot be medically or surgically corrected. This is the most common type of permanent hearing loss.
mixed hearing loss: Sometimes a conductive hearing loss occurs in combination with a sensorineural hearing loss(SNHL). In other words, there may be damage in the outer or middle ear and in the inner ear(cochlea) or auditory nerve. When this occurs, the hearing loss is referred to as a mixed hearing loss.
all these definitions were taken from this website.
and now the basics of a cochlear implant.  a c.i. actually takes the place of your cochlea.  in essence the doctor goes in and kills the cochlea to implant an artificial one.  so like a prosthetic limb that an amputee might wear.
so someone with a conductive hearing loss doesn't need a cochlear implant.  there's no reason to kill their cochlea since it is working just fine.  someone with sensioneural hearing loss could benefit from a cochlear implant.  and someone with mixed may or may not benefit from an implant.
shilo has mixed hearing loss.  both of her cochleas work perfectly fine.  she has either tissue or fluid in the inner ear where there should be space.  and her snhl is past the cochlea and on her auditory nerves.  so killing her cochlea would be like amputating a leg that would work just fine with a few pins to help the bones do what they should.
shilo uses (and i say that term loosely, because she's not a very big fan of wearing her hearing aid at the time) what is called a bone anchored hearing aid, on a soft band.  (they don't actually implant the anchors until children are at least five.  fda regulations).  so what her hearing aid does is bypass the outer ear, and send the  sound through her skull bone directly to her cochlea.  even a hearing person and put this on their head and 'hear' through it.  it's a pretty spectacular piece of equipment.  we have a friend, baby aria, who uses a baha as well.  her hearing level is normal with it.  shilo's hearing levels will never be normal because of the damage to the auditory nerves.  so even with the baha on she is still only hearing at a moderate level.
so the next time you talk to someone, and find out their child is deaf or hearing impaired, please don't encourage them to have an immediate amputation.  parents are being bombarded by so many different types of hearing aids, as well as trying to decide whether they want to use sign or an oral method (or both).  they have lots of different professionals telling them different things already.  i personally, am not even a fan of the 'i'm so sorry.'  we aren't that sad about her being deaf.  she's an awesome little girl.  she can feel music.  she LOVES signing.  LOVES it.  she has multiple words she signs regularly (mama was her first).  she understands so much more than she can sign back to us.  a hearing person feels like being deaf means you are missing out.  since she's never been able to hear, she isn't missing anything.  her world is what it always has been.  and we accept her just exactly the way she is.

why would we want to change her?

children and death.

so these past few weeks of our life have been filled with family and travel.  when we went home to see my family i spent a few evenings at the hospital with my papal.  he was 88.  i knew it was close to the end.  i have loved and adored him since i was very young.  i was so thankful that i had the opportunity to see him before he passed away this past sunday.
the funeral was yesterday.  my mom's side of the family is huge.  there were six kids, and they all have multiple kids, and they all have multiple kids, and gatherings get big and loud and chaotic.  there is some aspect of it that i will always sort of love.  and i had the amazing privilege of getting to do a short eulogy about my papal.  while there were tears shed, i really wanted to see it as a celebration of my papal.  he lived a full life.  he was ready to go home.  and people were able to say their goodbyes.  what a beautiful and wonderful way to be able to leave this world.

however, like it always is with my four year old, the questions were unending.  and the conversations were comical.  so i thought i would repost two of my facebook statuses from our conversations, and then share a little about the ones we had at the funeral.

conversation 1:
'mama, what are your grandma and grandpa doing in heaven?'
'i don't know baby. i think they are probably singing. i think there's lots of music in heaven. what do you think? what are some things you think you would like to do when you get to heaven?'
'i really like jumping on my bed. i think they are jumping on a bed with Jesus.'

it's quite an entertaining thought to picture my grandparents jumping on the bed together. :) 

conversation 2 (on tuesday when i was trying to tell her what we would be doing)
 (while attempting to explain to abigail that we would be going to the funeral for my grandpa tomorrow)
'will he be there?'
'sort of. his body will be there.'
'do we get to go to heaven? *jumping up and down* we get to go to heaven!!!'
'not quite. his body will be there, but he won't be able to talk or walk. it will look like he's sleeping, but the part that makes him alive, his soul, is in heaven.'
'does Jesus still live in his heart?'
conversations from the funeral
me-'when we get there today there will probably be lots of people who will cry.  grandma will probably cry because that was her papa.  mama will probably cry.  and lots of other people will be crying as well.  it's okay to cry.  people are sad because they will miss my papal until they get to see him again one day in heaven.'
(during the funeral) a-'mama, what time are you going to cry?'
i guess my crying was not as much as she had hoped for?!

on the way to the cemetery conversation
a-'why are we driving so slow?  (jason attempts an explanation but is sort of interrupted) why do they put him in the ground?  and why do they put dirt on top of him?'
m-'that's only his body.  his soul is in heaven.  he isn't in there anymore.'

aside with jason
m- 'i feel like i should've gotten some books on explaining death to children.  i'm feeling pretty inadequate right now.'
j-'i don't know that most four year olds ask about the same things that she is.

and last of all today.
a-'mama are you still sad?'
m-'well, i'm feeling better.  but mama will miss her papal and will probably be sad for a while.'
a-'that's okay.  i still love you, even when you cry.'

all right.  so this is also why i have not yet been able to pick random winners for headbands.  my goal is saturday for picking two winners (once from my facebook commentors and one from those who commented on here).  thanks for being patient.

epiphany.

so our little family does things a bit differently for christmas.  i'll come back to this.  first let me explain what epiphany is.
some people celebrate the twelve days of christmas.  it doesn't begin until christmas day.  so day one is december 25, and the twelfth day is january 6 (something about the calendar, and i don't know why it's really 13 days though).  it is known as epiphany.  it is celebrated in lots of places as the day the wise men brought gifts to Jesus.
so we decided before we had kiddos that we would do gifts on epiphany as a family.  we also decided that we would only do three gifts a piece (since that is what Jesus got as well).  it's a fun little tradition that brings the budget way down, causes us to be creative, and helps us to stay focused on what we are celebrating.
we also fudge it to work out on a saturday so we can all be home for the whole day.  so even though it's a day early, we celebrated epiphany today, and opened presents as a family.  the girls each got a pair of pajamas, books (we count these as one even though there was more than one book), and a bike of sorts.
jason and i don't stick to the three for the two of us because we sometimes just choose one bigger gift.
so that's the long explanation of our holiday gift exchange.  and here are some pictures of us all celebrating. (just a fair warning, jason made me the best present ever.  if you are prone to jealousy then you shouldn't look through the pictures).

seriously. best. husband. ever.

stocking.

stocking.

stocking.

excited about books.

excited about books tissue paper.

sweet ride.

even has a basket and a bell.

i am waiting a few more days to see if anyone else comments on the last post, and then i will pick a winner from all of you awesomes.

role call.

all right.  i'm not a huge number watcher on my blog, but i have been a little astonished at the number of hits i've bee getting lately.  i have 98 official followers, but so many more people than that reading my entries.
i started this blog to vent and connect to other families when abigail was diagnosed with NF1 3-1/2 years ago.  it has morphed into a little more than that with the addition of diagnoses for her, and a little with multiple diagnoses as well.
so, more to humor me than anything, if you read this, would you leave me a comment with how you ended up here?  adoption?  NF? mastocytosis? Down syndrome?  i have the cutest kids ever and you have to come see them?  whatever is fine, i just want to know more about all of you.
and for your time and effort to actually comment on this i'll make a super cute headband to send to one commentor. maybe even two if i'm feeling crazy.  i'll let you choose colors.
so just leave me a comment,  and feel free to leave it as anonymous.  i just want to know how so many awesome people ended up here!


happy new year.